Diabetic Neuropathy

Type 2
1

Well, first of last month, my feet erupted into major problems. Toes mostly hurting and unable to move around. Spent the holidays house-bound and mostly on my back. First my GP tested my toes and the blood flow in my feet and said it wasn’t diabetes related, probably something mechanical, so off with my credit card to a very costly specialist after a week and a half wait. $300 later, he said I had high arches, and the nerves at the base of the toes were inflamed.

Beyond that, he gave me no help. Just wanted to sell me ortho shoes, so I took anti inflammatory meds and tried to live through it. Got worse, then a little better, then worse, and meanwhile, I watched my waistline start to increase again, after I had just gotten rid of it… :frowning:

This AM I saw another podiatrist, and he did a lot more testing, and decided I have neuropathy, pretty advanced as well, especially in the big toes, as well as finding some anomalies on the top of my foot that contribute to the nerve pain.

He did a lot of the probe testing, and stuff like that, and then used the tuning fork on my big toes, and I guess I failed that one, as he would wait for me to tell him when I could no longer feel it, and I only went about half the time that he considers normal…Heavy sigh…

He gave me lyrica and metanx. Looked them up, and lyrica increases thoughts of suicide, which means I can’t take it, because I have those thoughts all the time anymore based on my life direction. The metanx looks okay, and he pointed me to some herbal stuff from GNC that I will be trying to relieve the pain.

My dx A1c was 6.8, and in three months was 5.5, and I even scored a 5.0 two months later, with the Walgreens/Bayer home test kit during their free testing day. He said that often the neuropathy occurs before the onset of the diabetes, but he could not console me on how come my numbers are nearly, I say nearly, normal. I have never seen a number on my meter over 190, ever, and 99% is under 135, and my fasting glucose test only sent me as high as 224, so I am loathe to think I have “serious” glucose problems, yet, but I guess you never known.

Now I have two doctor’s opinions, with two completely different results… Yes, I would say depression, which it is written can make neuropathy even worse, is a real problem for me. Lyrica might be enough to push me over, so I will avoid it.

Lots of details, but most of my posts are too long anyway :slight_smile: so that’s enough. Just wanted someplace to talk about it, and vent some frustration. No one here to talk to about it.

Anyone else suffer from this, or know much about it?

John

2

So what kind of specialist did you go to that charged you $300 and sold you shoes. You need to see a neurologist. A podiatrist can do some basic diagnostics, but only a neurologist is equiped to do the proper nerve conduction tests. You don’t really know if you have diabetic neuropathy, it could be something else. Have you spent the month watching footbal with your feet crossed? That could do it. In either case, think about seeing a specialist. In many cases, getting your blood sugar back under tight control will enable you to stop any ongoing diabetic neuropathy. And many people strongly beleive that you can actually heal over time by just keeping your blood sugar controlled tightly. Oh, and some people recommend ALA.

3

I can concur When I was dx’d 10 months ago they had me do the nerve conduction tests found I had neuropathy from my hips to my feet it does cause me a great deal of grief. My doctor to me to keep my numbers in line and try to stay as active as possible.

4

Hey John,

I too have had “tingling” in my hands and feet since I was dx (not sure why it only started at that time?) but it has been better in the last month or so. Its never been “painful” but what I would call a mild nuisance. With the help of you and other on here I have been keeping my numbers quite low and very rarely go above 150 for the last few months so I’m not sure why I have this.

I did read somewhere (I’ve probably read a few books worth of info lately) that nerves will and can grow back over time, with tight control, and exercise but it does take time and wont happen over night.

I found this guys web site informative…

Hope you get this worked out… take care…

Paul

BTW… I enjoy reading your “long” posts so don’t worry about it…

5

John,

Vent away!

Been following your foot problems. Sorry to hear of your neuropathy diagnosis. A positive thing is that peripheral neuropathies can heal. It takes time & great control, but it can be done. Remember the ALA (alpha lipoic acid) I mentioned before? That may help by repairing the myelin sheath of nerves.

We often don’t know how long our BG has been high before getting diagnosed. Your doctor saying neuropathies occur before the onset of diabetes may really mean before the onset of diagnosis. Or, it’s the usual nonsense of doc telling patients their BG is nothing to worry about when it’s too high. Other reasons for neuropathy, but high BG is at the top of the list.

I’ve had what thought was sciatica on & off for years. My endo says it’s permanent damage from rising BG for years before I had any idea I had diabetes. I keep hoping it will go away the days I can barely walk from pain, but he’s right that it’s permanent.

6

John:

If we can’t be windy on this site about diabetes, where in the heck can we do so? You should see some of my blogs. You’d think I was trying to write a full-size novel. So, go to it. If we don’t have the stamina to read all, then we just come back later!!

Actually, most people think that as long as your BG is such and such, you’re OK. Not true. Most published results say that to be below 125 fasting and 140 (?) post-prandial. So if you are constantly running around 135, it’s still a little bit too high. The effects of high BG are cumulative and, therefore, can cause complications … maybe many years down the road … but it still has an effect.

If you have read many of my posts or blogs, you would know that I know exactly what you are talking about. Foot pain has been with me for many years. In fact, I think it started before my DX of the big D with feet that really hurt and I would go through shoes upon shoes before I found that Rockport shoes were the only ones that I could wear on my tired and hurting feet. Then the needles and pins. Then along came the DVTs behind the knees and I have full loss of sensation in the legs/feet. Thus, all leading to my current feet problems!!

So rage away. We can take it!

Lois La Rose
Milwaukee, WI

7

I did not buy any shoes :slight_smile: My GP sent me to a diabetic podiatrist because he thought I had mechanical issues with the feet, which xrays showed to be true. Something on the top of the foot, that aggravates the nerves. I have it written somewhere, and I have the xrays. This doctor said there was no neuropathy, and that diabetes had nothing to do with what I am suffering.

I spent the entire month of December hobbling around, and no, I did not sit on the couch with my feet crossed for the whole time :slight_smile: I did spend last weekend off my feet for probably 95% of the time, and they felt better on Monday, and as I resumed my normal routines, they got worse…

I don’t believe I can get my BG under any tighter control. Last official A1c was 5.5, two months ago, I got a freebie at the Walgreens/Bayer fair for free with their home kit, and it was 5.0. I almost never go beyond 140, in fact probably not twice in the last three months. With A1c in the 5’s, I think that is about the best I can do, and I find it hard to accept that I have damaged my feet because of BG levels, when they were not all that bad at the dx (6.8). Who knows for how long, but that is all I have to go on.

I have ordered a supply of ALA, on today’s doctor’s recommendation as well.

The way I see it, a neurologist visit and testing will cost me well over $300, and without a job, or insurance, I am just gonna have to sit around and be depressed for now.

Much obliged, as always,

John

8

Thanks Paul,

My numbers are as tight as I can make them, and I was quite active until this hit. Been mostly inactive for a month now. One doctor says “play through it” the other says “don’t walk, find some other way to work out, like in a pool” as if I could afford that…

Thanks,

John

9

Thanks for the article Paul. Next week is another A1c test (bet I go up due to not working out for a month…) and I talked the doctor into doing a blood workup as well, so I can see the triglyceride numbers, and the hdl, ldl’s, etc since I have been doing the low carb. That will tell me a few things.

The doctor this AM prescribed Lyrica. I went and read about it, and I don’t want to use it. I know they always CY their A when they write about side effects, but I am depressed and think of suicide enough on my own, that I don’t need a drug that increases those things.

Also got Mentanz which seems like it should help, based on what I can find about it. Ordered some ALA and he even told me to take Evening Primrose Oil, for the Gamm Linolenic Acid in it.

Kind of a bad idea to start taking four different drugs/herbal additives all at once, since if I get better, I won’t know which one did the job, so I will be doing one at a time, and just have to live with not walking much until something comes along :slight_smile:

Much obliged, and you hang in there as well.

John

10

Hi Gerri,

Thanks for the encouragement. I know I can’t do any better with my numbers, and I am depressed as hell that my initial dx A1c so so low, relative to what I have seen here and other places, and yet within those 7 months, I have serious complications, apparently. Being single, and alone, I ate the same stuff day in and day out, so if I was at 6.8 last july, logic dictates that I could have been there a while, but I don’t believe I would have been a whole lot higher than that, ever. Can’t really tell tho.

I feel the depression really coming on. So much to do, and unable to do it. Very upsetting. I hate getting up in the AM, knowing I have to put my feet on the ground and feel that pain. It has progressed to where I can’t sleep because the blankets on the ends of my toes is unbearable. I had to use some couch and chair cushions under the sheets to make a tent for my feet so they don’t get touched, but it just makes for crappy sleep, always having to find a place to put the feet where it doesn’t hurt…

Oh well for now. Gonna go cry and be angry, then get depressed, and try to sort all this out. No one likes going hiking in the mountains more than I do. Guess I need to find something else to do…

Time. Time. Time…

John

11

Paul I know Dr Bernstein talks about with good control of your sugars you stand a good chance of reversing some of the damage. Your young enough so you should do fine and hopefully repair what has been damaged…

My feet get cold at times and it feels like I am standing out in a snowbank. Then it goes away and I dont have it for awhile. All of us have different issues. Take care.

12

Hi Lois,

Thank you for the kind words. I am just long winded all the time :slight_smile: I try to keep an eye on it tho.

I “live” around 95 between meals, and never exceed 140 in an hour (okay, once or twice) I believe the highest number on my meter is 180 or so, once. Never been over 200 except for my fasting test. Within two hours of eating, I am pretty much always under 100.

Based on what I read here and other sources, I really have “diabetes lite” even tho I know that can, and will change, so to have complications like this has me angry at the moment.

OBTW, the podiatrist this AM asked me about my numbers, and I told him what I have said in these posts, and he told me that I should ask my GP to take the diabetes out of my record. He said 5- 5.5 is so close to normal, and I do it with just diet and exercise (apparently even without exercise ) that I shouldn’t have it on my record, for insurance and other reasons. I found that to be an interesting attitude. My doctor would never do that, even tho, in a way, its probably not all that far fetched at this point in my disease progression.

I don’t know what to do about shoes. I asked about inserts and he said they would help my high arches, but not the neuropathy. Gave me some pads and told me to open my shoe laces and keep the pads atop my foot, without any pressure on them to relieve the nerve that runs across the top to the big toe. Said he could make me an insert. I believe it was about $300. Can’t do it. I do know that nothing over the counter is of any value. Dr Scholl has quite a racket going there :slight_smile:

I shall rage later :slight_smile: Right now, I am very upset and depressed. FWIW, and not really to elicit any sympathy, but it really sucks to come home from such a doctor visit, with this kind of information, and there is no one there to talk to about it. Adds to my depression and sadness.

That is why I am glad to have a place like this to ramble on and on. Its about all I have.

Much obliged for your time and thoughts,

John

13

You may want to get checked for gout. It seems pretty unlikely it’s neuropathy. Just my opinion.

14

John, I just wanted to say there is an eloquence and tenderness in your writing on this forum that few have. You really write well. I will be thinking of you buddy during this hard time. Its ok to be sad but dont be sad all the time. We are all here for ya… Take care

15

Hey John,

Your A1c at diagnosis was good. Mine was 11 something. Who knows with this crazy disease!

Maybe, for some reason, your body is particularly sensitive. But more important than the past numbers, are what they are from here on. You’ve done amazingly well & it may take a bit longer to heal & regenerate. Can guess what you’re thinking–why now, why haven’t the last 7 months made a difference? Wish I knew the answers, but maybe it’s a last straw kind of thing where several readings over 140 pushed the button on your nerves. I know two people who had neuropathy for years & turned it around with good BG. Granted, they’re disciplined, but so are you.

Understand the depression. It’s depressing! Aside from everything else, not getting sleep is enough to send a person into depression.

Have a good cry. I’d be boo-hooing my heart out. Awful! Better anger outwards than inwards.

Wish you were close. I’d send an acupuncturist to your house to help the pain.

I’m going to make a bet that you’ll be hiking again.

16

Pauly,

Can’t think of the last time anyone gave me such a wonderful compliment. Thank you, it helps a lot.

I am going to bed, and hope to find a better tomorrow.

Shortest post I ever made :slight_smile:

John

17

Yes, I agree. I have neuropathy of the feet. My husband - not diabetic - was on dialysis for four years and had a kidney transplant. While he was on dialysis he used to get gout, in his leg, and it is very painful. It doesn’t come and go like neuropathy, it is there - constant. You need to be on allopruinol on a maintenance schedule to stop it from re-occuring. It is inflammation. Neuropathy is like electric-shocks running through your legs and feet and often occurs just at night when you try and sleep. I have been on maintenance Elavil for many years and it does help - Apart from the obvious of tight sugar control.
Sheila

18

Sorry about your husband… That sounds awful. Hope he is doing okay now.

I have been told by many about maybe its gout, but I am convinced its not. I read and read, and have none of those symptoms. It began at the toe joints, and is moving through my foot and up into my ankles and shins.

When I go to bed, its hard to get comfortable, with the tingling and pain. I have “built” a tent at the foot of the bed, so I can keep the covers off my feet, especially the toes when I am on my back. So far, it doesn’t wake me up once I go out. I sleep well, but when morning comes, its very uncomfortable, and I don’t look forward to having my feet hit the floor. :slight_smile: I massge them, and rub them, and put them on the floor and just go “crap, another day of this, coming up” Tough to work with :frowning:

I am not 100% sure what exactly is wrong, and what to expect as time goes on. As I said, two doctors, two different opinions, and not matching my symptoms up with anyone else just yet. I don’t feel big shocks up my legs, but as I sit here, the inside of my ankles, and the ball of my foot are tingling, like they are “asleep” Plus, and this is really debilitating, my toe joint, where they meet the foot, feel like I am walking on a “picker bush” (that’s what we called them as kids ) or like walking barefoot on dead and really stiff grass. Just prickly, and weird when I walk. The word “crunchy” almost applies.

I started taking Lyrica, but am not too happy at the prospect of long term use based on reading, and listening to others.

I appreciate hearing that it does, or might, go away. Ironic that I have had very good control, then this hits, and I cannot work out like I was doing, so my numbers are not as good as they were, which can make it worse, although I don’t believe they are that bad. Still don’t go past 140,after meals, and return to 95-100 within 2 hours, but the morning numbers are up about 10 points. Also messing with my BP, which the exercise really helped drop.

Ah well, so it goes :slight_smile: Sure do thank you for jumping in and talking about your experience and I hope all goes well for you.

Much obliged,

John

19

Hi Lois,

Where can I read your blogs?

I see the link at the top of the page, but is there a way to get to your words directly? Based on how I ramble on, I think I ought to join the bloggers and go from there :slight_smile:

Thanks,

John

20

Dear John:
Well, if it is not gout it probably is neuropathy. Gout tends to be extremely painful in just one area, not going up the legs. The trouble is, with type 2, you run high blood sugars even before you know your diagnosis. That is probably when the damage is done. Personally, being a type 1 for so long, and not having the modern day testing available and pumps and GCM, it was very hard to control the blood sugars and later the consequences. I have just accepted the fact that I have neuropathy. I take Elavil every night and it does help, but on the nights when it is really bad I try and get an Ambien and knock myself out. The electric shocks are so debilitating and yes they do “improve” with good BG control but I don’t think they ever go away completely. I also find if I exercise a lot they are more painful at night. I have just accepted it, it is one of the things of long-term diabetes, and even though you have not been diagnosed for long the damage could have been done before. Yes, you can stop the progression with good control. Good luck to you.
Sheila
Type 1 55 years and still counting.